Change and loss -- coming to terms with Alzheimer's Change and loss -- coming to terms with Alzheimer's (February 14, 2003)

By Diana Reynolds Roome

"When I placed my husband in a residential care facility, it was like a little death before the real death," says Ann Davidson, whose husband, once a professor of physiology at Stanford University, died just over a year ago.

It was 12 years since he had been diagnosed with Alzheimer's disease, and Davidson took care of him for the first six of those. "At first, I was in complete and utter shock," she said. At that time there was very little literature or support available for people who had recently been diagnosed, and there was also a stigma attached to dementia. This could cause increasing isolation in the life of the caregiver as well as the person suffering the disease.

Even though the situation is improved today, the condition is never easy to face, either for patients or their families. Alzheimer's brings progressive declines -- both cognitive and physical -- which lead to loss of work, status, and ordinary social interaction. In a marriage, there is loss of intimacy and shared recreational activities, as it not only robs people of skills but can also cause changes in mood and personality. Family members face the slow emotional and mental disappearance of a person they once knew and interacted with in countless ways.

By the time Davidson's husband died, the national nonprofit Alzheimer's Association, had expanded its programs to address the many aspects of Alzheimer's disease and to reach more of the people affected by it. The organization's Northern California headquarters, now including Northern Nevada, has been based in Mountain View for 15 years. Its slogan, "Someone to stand by you" is accompanied by two linked leaning figures, which aptly express the caregiver's close support of the patient, and AA's support of them both.

Support groups, workshops and day conferences around the Bay Area and beyond offer support and information for those suffering from early- to late-stage dementia, and for their caregivers. Subjects range from caregiving skills, decision making, and preventing burnout, to spirituality and aging, as well as legal and financial issues arising from dementia.

Several other organizations also offer support groups for caregivers, usually focusing on common daily challenges: dealing with agitation or oppositional behavior, day care centers and drugs, for example.

Even with such a wide range of events offered, it became clear through calls received on the 24-hour telephone Helpline that one group did not have anywhere to turn. These were family members and caregivers who had suffered loss due to placement or death of an Alzheimer's patient. Many of them were undergoing unique stresses -- guilt, anger and depression as well as grief - which were not being addressed either by conventional bereavement groups or by caregiver support groups. These complex and ambivalent feelings were also hard to share with any except those who had experienced them first hand.

In response, Toni Morley, support group coordinator for the West Bay, and Julia Kasl-Godley, a clinical psychologist based at the Hospice Care Center at Palo Alto Veterans Hospital, used input from other Alzheimer's Association staff to develop an eight-week program called "Managing Loss and Change."

Ann Davidson had experienced both types of loss -- through placement of her husband in a skilled nursing facility and eventually through his death. She signed up for the group last year. Once a week for eight weeks, the participants (usually around six to eight individuals) met to share their experiences in a number of ways. They ate together first, then lit a candle "for illumination" and to provide both focus and a marker between the business of the day and this special time, devoted exclusively to a very complex condition of grief.

"I loved that it wasn't just talking," said Davidson. "Lighting a candle was a ritual to create a safe space. We were not going to talk about the irritations of daily life, we were going to focus on our feelings."

This was followed sometimes by stress reduction and cognitive exercises. Designed to bring emotions to a more manageable level of intensity, these exercises are based on cognitive behavioral therapy, a proven and effective method that involves changing the way a person thinks in order to change the way they feel.

Finding alternative ways to look at events which could not in themselves be changed was enormously helpful, says Davidson. One participant who was racked by guilt about placing her mother in residential care came to realize that she was indeed still taking care of her, even though she was no longer doing the laundry herself. When she came to understand that she didn't have to drive herself to exhaustion but could perhaps be more loving and thoughtful toward her mother when she did not have to do all the practical caring tasks as well, she was able to shift her point of view.

"Many people beat themselves up with what they should have done," explains Kasl-Godley. "In the group they learn to identify and talk back to those thoughts, and be a little kinder and more reasonable toward themselves."

Art projects were the major focus of some sessions. One of these involved drawing the "Circle of the Meaning of Life." Participants drew the significant people, places and events in their lives, plus activities, hopes, dreams and beliefs before diagnosis inside the circle. Then, symbolically representing the event of the Alzheimer's diagnosis, they noted how things within the circle changed. By symbolizing the event of death, they see again what changes occur within the circle, and in their lives.

"Being able to take what's inside you and put it on paper helps objectify what's going on inside," said Morley, an art therapist, family therapist and hypnotherapist.

"The art projects were brilliant but they had nothing to do with making beautiful paintings or drawings," said Davidson. "Instead they offered non-verbal experiences and provided a way to express grief and bereavement. We would sink into our own thoughts for half an hour, and it was amazing what came out -- deep things we might never have said and sometimes didn't realize we felt."

She kept the pictures she drew to remind her of the interior journey she traveled from the time her husband died until now.

Alzheimer's and related diseases of the brain afflict an estimated 90,000 people in the Bay Area alone, and rob them of mental and physical functioning over a period from two to 20 years. Since 1980 the national Alzheimer's Association has funded hundreds of research projects dedicated to finding causes and cures, or slowing the relentless progression of the disease. While progress is being made, positive intervention in the lives of those dealing with Alzheimer's at all its stages is a major part of the association's work.

Arts programs for patients are offered at several sites in the Bay Area and provide a vital, non-verbal outlet as well as producing some extraordinary and expressive paintings. In addition to group events, educational programs, and an informative newsletter, the telephone Helpline, available 24-hours seven days a week, receives over 5,000 calls a year in northern California. Through them people receive information, expert advice and referrals.

Alzheimer's Association @caption2065 W. El Camino Real, Suite C, Mountain View, CA 94040

www.alznorcal.org or call Helpline 1-800-660-1993 (24/7).

"Managing Loss and Change:" Eight-week group in Mountain View ($60 scholarships available). Contact Toni Morley, 1-800-660-1993, for information and pre-registration.

Ann Davidson's memoir, "Alzheimer's: A Love Story, One Year in My Husband's Journey," is available from the Alzheimer's Association's Mountain View office, Kepler's Bookstore (Menlo Park), Palo Alto and Menlo Park public libraries, and Amazon.com.

E-mail Diana Reynolds Roome at [email protected]